The Desmoid Tumor Research Foundation
Designed for researchers and medical professionals, the annual DTRF International Desmoid Tumor Research Workshop is a critically important, collaborative event bringing together some of the brightest minds in the field of desmoid tumors from a variety of disciplines. It presents the latest information on desmoid treatments and research, and facilitates new collaborations to move the […]
This weekend brings together patients, caregivers, researchers, clinicians and industry professionals to connect, collaborate, and learn. Weekend events include DTRF Patient Meeting, DTRF Int’l Research Workshop, RFA 5K & Fun Run, and DTRF Community Networking Event.
Founded in 2007, the annual DTRF Patient Meeting is our signature patient support event of the DTRF Together We Will Weekend. The meeting includes educational presentations by clinicians and researchers, with questions from the audience, as well as a talk by a desmoid patient. Content is geared toward topics of interest to our patient and […]
Community connections can be transformative and are essential to the patient and caregiver journey. Our Community Networking Event is a wonderful opportunity to have one-on-one, real-time conversations with fellow patients and caregivers. The event is structured to provide a natural way to get to know attendees and share experiences by connecting in small groups in […]
The RFA 5K & Fun Run, founded by desmoid tumor patient Sera Snyder in 2010, is our annual signature fundraising event and the celebratory finale of the annual DTRF Together We Will Weekend. The desmoid tumor community and supporters gather to walk, run, and roll on our accessible course together as a unified force against […]
1st Annual WMK Classic (presented by WYL) Charity 3-on-3 Small Ball Lacrosse Tournament benefitting the DTRF in Winchester, Massachusetts. Contact Chris Froeb for more information: chrisfroeb@gmail.com
Athina's Ride is a cycling event that starts with training rides in the spring and culminates on July 13/14th weekend. You can either complete the ride on your own, with family & friends or join our ride led by Athina Merckx on the Saturday July 13th in Penticton, British Columbia. Come join Athina and support […]
On Thursday, September 5th at 4pm ET, join us for a webinar featuring Dr. Dale Shepard from the Cleveland Clinic. He will explain how impactful the testing of biomarkers is in the diagnosis and treatment of desmoid tumors. He will also touch on genetic testing in relation to CTNNB1 mutations. Register Here Dale R. Shepard […]
Celebrate Desmoid Tumor Awareness Month with us! On Thursday, September 11th at 3pm ET, join us for a Facebook Live featuring Megan Barrell, Desmoid Tumor Patient Advocate. The conversation will focus on Megan's lived experience and patient journey as a young adult with a desmoid tumor.
$100 - Per Player includes 18 holes w/cart, reception, drink tickets, raffles All proceeds go to support research for a cure through the Desmoid Tumor Research Foundation Location: Crestview Golf Course Learn more by downloading the event guide here!
Together we will advance research, empower our community with information, foster connection, and fundraise for a cure. We are excited to announce the DTRF Together We Will Weekend and RFA Walk is moving to Houston, TX on September 20-22, 2024! Events include the DTRF International Research Workshop for medical and industry professionals, along with DTRF […]
The DTRF International Research Workshop features: Scientific talks on current research and treatment A forum to share research findings, develop new collaborations, bring new scientists into the desmoid tumor research field, and discuss innovations that will lead to new treatments Live questions/answers and discussions related to the scientific talks Group discussions focusing on gaps in […]
Founded in 2007, the annual DTRF Patient Meeting is our signature patient support event of the DTRF Together We Will Weekend. It always takes place on Saturday, the day before our annual RFA Walk. The meeting includes educational presentations by clinicians and researchers, with questions from the audience, as well as a talk by a desmoid patient. Content is geared […]
The 2024 RFA Walk offers something for everyone; build a team, participate as an individual, create awareness, and help fundraise for a cure! Running for Answers (RFA), founded in Philadelphia by desmoid tumor patient Sera Snyder in 2009, is the annual DTRF signature fundraising event. This year, the desmoid tumor patient community and supporters will come […]
The Ortwerth family invites you to the 6th Annual Swing For A Cure - St. Louis to raise funds for desmoid tumor research! Register HERE for this special event.
Celebrate Desmoid Tumor Awareness Month with us! On Thursday, September 25th at 3pm ET, join us for a Facebook Live featuring Amanda MacKinnon, caregiver of a desmoid tumor patient. The conversation will focus on Amanda's caregiver journey.
Register today for the upcoming educational webinar hosted by the DTRF with special guests Bernd Kasper, MD, PhD, Professor, University of Heidelberg, Mannheim University Medical Center in Germany and Jean-Emmanuel Kurtz, MD, PhD, Professor of Medical Oncology from Strasbourg University- Hôpitaux Universitaires de Strasbourg in France. During this webinar, Dr. Kurtz will talk about how […]
The JoeStrong Volleyball Tournament is back again! Scan the QR Code or click on the event website link below to register for this fun annual event in Austin, TX.
During this virtual event, Dr. Laurie McKenzie will share how you can obtain a fertility assessment before and after treatment for desmoid tumors. She will share fertility preservation options available for both men and women. Also, she'll provide some additional reliable resources in terms of fertility preservation options and reproductive considerations. This will be a […]
The Pink in the Rink fundraiser will include games played by the Orchard Lake Hockey Association followed by three games featuring the Orchard Lake St. Mary’s (OLSM) hockey teams vs their rival – Brother Rice (BR), culminating with the Varsity game at 7:00pm. Throughout the day there will be basket raffles, 50/50 raffles as well […]
Have questions about your desmoid tumor diagnosis? Want to learn from sarcoma specialists who work with desmoid tumors? Looking to come face-to-face with other patients and caregivers who share your journey? Join us on February 8th at Pennsylvania Hospital's Zubrow Auditorium in Center City Philadelphia for an opportunity to connect with and learn from other desmoid tumor […]
In honor of Rare Disease Day this year, join us LIVE on Facebook on February 27th, at 6 PM ET for a conversation with desmoid tumor patient, Amy Beitz! You don't want to miss Amy share her desmoid tumor story. To join the event and ask questions, visit our Facebook Live Event link in our […]
The DTRF is excited to try new and different ways of sharing knowledge with the desmoid patient community. Join us for “Ask the Radiologist”, a unique opportunity to virtually - face-to-face - speak with a leading radiologist about your desmoid tumor questions on Monday, March 24th at 6PM ET. This conversation will be an *unrecorded* […]
Running for Answers (RFA) is going VIRTUAL! Even though there won't be an in-person run or walk this year, help the DTRF carry on the RFA tradition and make a bigger impact by launching a virtual fundraiser today! Running for Answers was founded in Philadelphia by desmoid tumor patient Sera Snyder in 2009 and quickly became DTRF's annual fundraising […]
Register today for the upcoming webinar on May 12th @ 6PM ET entitled, “A New Clinical Trial for Desmoid Tumor Patients: FOG-001." This webinar is hosted by the DTRF with special guest Gregory Cote, MD, PhD, Physician at Massachusetts General Hospital and Associate Professor at Harvard Medical School. Join us to ask questions in real […]
Join us for a conversation about the classification and language used to describe desmoid tumors. We'll hear about the challenges in communication faced by both patients and doctors, and what we - and you! - can do moving forward to help alleviate misunderstandings about this rare disease. Special Guests include: ✨️ Ravin Ratan, MD, Associate […]
$100 - Per Player includes 18 holes with golf cart, reception, drink tickets & raffles All proceeds of this event go to support research for a cure through the Desmoid Tumor Research Foundation! Location: Crestview Golf Course - Zeeland, Michigan Learn more by downloading the event guide here!
Online registration is closed. In-person registration is still available at event check-in. Join us for the 2025 DTRF Together We Will Weekend in Chicago, IL on September 12-13 (Fri/Sat)! Featured events include the DTRF International Research Workshop for medical and industry professionals, along with the DTRF Annual Patient Meeting for all attendees. The annual DTRF Together We Will Weekend brings together patients, caregivers, researchers, clinicians and […]
The Ortwerth family invites you to the 7th Annual Swing For A Cure - St. Louis to raise funds for desmoid tumor research! Register HERE for this special event.
The understanding of pregnancy-associated desmoids has increased significantly over the past several years. In this virtual educational webinar, the panel will discuss the literature and their approach to desmoids. Management of desmoids in the setting of pregnancy should be tailored to the patient and specific clinical situation and typically results in a healthy pregnancy and […]
TRIBE is organizing the first annual “Rock for a Cure” concert featuring Batterhead and Tom Fills for an amazing charity near and dear to our hearts - Desmoid Tumor Research Foundation. DTRF is funding grants for groundbreaking research into why desmoid tumors spontaneously regress--without any treatment--at a rate nearly 10 times as frequently as with […]
Reserve your spot at our upcoming patient education event in collaboration with Stanford School of Medicine to connect with and learn from other desmoid tumor patients and clinicians. A variety of educational talks and a networking opportunity will be included in this half day patient-centered event. Event Schedule: Registration: 8-8:30AM Educational Meeting: 8:30AM-12PM Lunch & Networking: 12-1PM […]
Join us LIVE on Facebook and Instagram in honor of Rare Disease Day! On Thursday, February 26th at 5 PM ET, Morgan will share her personal journey living with a desmoid tumor. She’ll discuss the challenges, uncertainties, and resilience that so many in the desmoid community know firsthand. This live event is an opportunity to […]
Help us Spread the Word by joining the Desmoid Tumor Research Foundation on March 24th from 6-7 PM ET for an educational webinar exploring desmoid tumor diagnosis, pathology classification, and the real-world impact these distinctions have on treatment decisions and patient wellbeing. This multidisciplinary discussion will examine how desmoid tumors are identified and categorized, what […]
